Volunteering for ME research

There are not currently any opportunities to volunteer for an ME Research UK-funded research project. Any future opportunities will be promoted here and on our social media.

ME Research UK believes that only the power of research will change the future of ME/CFS. Diseases such as ME/CFS are under-researched with much still to be learned about its causes, disease progression and treatments. Data and participation in research will improve our understanding of the disease, and aid in the eventual development of diagnostic and therapeutic trials.

Some research projects may require volunteers who have been diagnosed with ME/CFS, and sometimes also volunteers without a medical condition (healthy controls). What is involved depends entirely on the research – it could be completing questionnaires, donating a blood sample, or attending a specialist clinic. No project is the same as all depends on the needs of the researchers.

On the other hand, some research projects will not require to advertise for volunteers at all. They may already have participants enrolled before they begin, or the area of research uses samples from a biobank (such as the UK ME/CFS Biobank, whose establishment was part-funded by ME Research UK), or the researchers are examining data only. All these factors restrict the opportunities available for those wishing to volunteer.

It is important to recall that approximately a quarter of people with ME/CFS can be categorised as having severe or very severe ME/CFS, and very little research has been done with those most affected by the disease. This is largely because the health burdens make it very difficult for the those severely affected to engage with research. Researchers ought to be live to these challenges and practical guidance is available to faciliate studies.

If you wish to volunteer for research

ME Research UK-funded project volunteering opportunities.

Opportunities to volunteer for one of our current projects will be advertised here, on our home page, and via our social media including Facebook.

Other research opportunities

ME Research UK is keen to assist researchers who need to recruit volunteers for biomedical ME/CFS studies. This is especially so for PhD-level researchers, and the charity is often asked to promote a student’s questionnaire or their study requirements. Providing the project appears to be suitable, the opportunity will be advertsied on ME Research UK’s social media, but by doing so ME Research UK does not endorse the research. Requests for us to advertise volunteer opportunities can be made to contact@meresearch.org.uk or via our contact form.

Information is limited but the NHS app (available to those aged 13 years and over who are registered with a GB in England and Isle of Man) has an option to indicate a patient’s interest for future research – ME/CFS and Postural tachycardia syndrome (PoTS) are listed.

Volunteer Registries

Individuals may wish to sign up to a research register. By registering you could increase your chances of taking part in a study, as the researchers will contact you when something suitable comes along.

The StudyME initiative is a free global study participant registry which has been developed as a recruitment tool to connect individuals interested in participating in research studies with the researchers conducting them. The stated goal is to enhance the quality of life for individuals affected by Chronic Complex Diseases (ME/CFS, Long COVID, Fibromyalgia, and other post-infection illnesses) by expediting research in these areas. The database is not limited to US residents nor is it only available to US researchers. People in good health are also encouraged to sign up to support patient communities and promote scientific research.

Each study will have specific eligibility criteria set by the researchers themselves. The initiative’s role is simply to connect interested participants with research teams to accelerate progress in these areas. No personal medical information is required. All that is needed is contact information and areas of research interest.

Although also based in the US, the Solve Together initiative aims to collect uniform clinical data about post-infectious diseases (specifically ME/CFS and long COVID) and is also a contact registry that will be used to recruit for clinical studies.

In the UK there are a number of non-ME/CFS specific initiatives:

  1. The NIHR’s People in Research portal lists opportunities for members of the public to get involved in research within the UK. Opportunities can be scrolled through or sorted by topic, type of involvement or location using drop-down menus.
  2. NIHR in conjuction with the NHS host a ‘Be part of Research‘ site which allows people to register their details and aims to discover new and better ways to treat diseases, improve the NHS and the quality of care across the country.
  3. The Scottish Health Research Register (SHARE) is a register of people aged 11 and over who are willing to be invited to take part in research projects, and have also consented to allow SHARE to use any leftover blood following routine clinical testing. This will aid health research and improve future healthcare throughout Scotland.

Cure ME’s UK ME/CFS Biobank

The UK ME/CFS Biobank has over 600 people participating in the project – people with ME/CFS, Multiple Sclerosis and healthy controls and holds over 35,000 aliquots (samples).

Although not currently recruiting new volunteers, interested parties can fill out the contact form with name, date of birth and address, and CureME will add the information to their Future Studies mailing list.

General opportunities for research volunteering (non ME/CFS specific)

NIHR BioResource allows participants to play an important role in helping drive health research forward. Everyone who volunteers contributes to the search for better diagnosis and treatment into a range of common and rare diseases.

The UK Brain Banks Network is an initiative which was originally led by the MRC, to establish a coordinated national network of UK brain tissue resources (banks) for researchers to use.

The UK Biobank is a large-scale biomedical database and research resource, containing in-depth genetic and health information from half a million UK participants. The database is regularly augmented with additional data and is globally accessible to approved researchers undertaking vital research into the most common and life-threatening diseases. Participants are invited to take part either by letter or in a healthcare setting.

FOR RESEARCHERS

As Patient and Public Involvement (PPI) in research becomes more widely accepted, and expected, by funders, there already is a growing need for PPI members with lived experience of ME/CFS, Long Covid and other related conditions.

This thread on science4me is intended as a space where requests for PPI members by researchers can be made. Details can be found on the site.

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